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04-07-2015

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

Auteurs: Antoine Dany, Coralie Barbe, Amandine Rapin, Christian Réveillère, Jean-Benoit Hardouin, Isabella Morrone, Aurore Wolak-Thierry, Moustapha Dramé, Arnaud Calmus, Sabrina Sacconi, Guillaume Bassez, Vincent Tiffreau, Isabelle Richard, Benjamin Gallais, Hélène Prigent, Redha Taiar, Damien Jolly, Jean-Luc Novella, François Constant Boyer

Gepubliceerd in: Quality of Life Research | Uitgave 11/2015

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Abstract

Purpose

To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT).

Methods

A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory.

Results

We constructed a questionnaire named QoL–NMD which is composed of two general items and 24 items classified in three domains: (1) “Impact of Physical Symptoms,” (2) “Self-perception” and (3) “Activities and Social Participation.” Each domain has good psychometric properties (Cronbach’s alpha > 0.77, test–retest ICC > 0.81, Loevinger’s H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire.

Conclusion

This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL–NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL–NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.
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Metagegevens
Titel
Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease
Auteurs
Antoine Dany
Coralie Barbe
Amandine Rapin
Christian Réveillère
Jean-Benoit Hardouin
Isabella Morrone
Aurore Wolak-Thierry
Moustapha Dramé
Arnaud Calmus
Sabrina Sacconi
Guillaume Bassez
Vincent Tiffreau
Isabelle Richard
Benjamin Gallais
Hélène Prigent
Redha Taiar
Damien Jolly
Jean-Luc Novella
François Constant Boyer
Publicatiedatum
04-07-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 11/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1013-8

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